Gentle readers I beg your patience while I rant for a bit. The last few days have not gone well and the next few aren’t looking great either.
I’m having a major Fibromyalgia flare up. For the last three days I’ve had a muscle spasm in my back so bad that the pain has gone through excruciating and into exquisite. I’m taking Tramadol, Paracetamol and vaping CBD and I still can’t bend without screaming. There is no comfortable way for me to sit, stand or lie. Part of the spasm is over my left kidney and if I started pissing blood it would be a relief because a kidney infection can be treated, kidney stones pass, even kidney failure can be managed.
Fortunately that’s distracting me from the sudden appearance of a hole in one of my back teeth. I think a filling might have fallen out. Or maybe a bit of the tooth has cracked off. I already had a dental appointment this week so that’s lucky. I’m trying really hard to believe that it’s lucky but it’s hard to think straight over the screaming pain from my back.
I’m still not back on my usual eating plan because of difficulty getting the shopping sorted. Between trouble with deliveries and the problem with my back and my spouse’s anxiety being too bad to do the shopping for me I’m having difficulty sorting out a coherent meal plan.
I’m having trouble getting anything done. I started this weekend with a book I’m wanted to read, a film I wanted to watch on Netflix, a film I’m trying to see in the cinema before it leaves a podcast I’m trying to catch up with and a novel that I’m trying to finish writing. In all I managed 15 pages of the book, neither of the films, 3 episodes of the podcast and about 2,000 re-written words of my novel. That’s pathetic.
And the worst of it is this feeling that my life is slipping away from me. Time is passing and I’m not doing anything with it. Precious seconds of my life are ticking by and I am variously paralyzed by pain, or depression, or indecision, or just lack of basic organisational skills.
This week I lost the same 200g that I gained last week and lost the week before. I’m not complaining because I’ve had to step back from the diet plan I was following due to the ‘Beast from the East’ disrupting food deliveries.*
That’s not what I’m going to focus on today. I’m feeling a lot more thoughtful about how being a Spoonie ( a person with a chronic health problem, see here for an explanation of Spoon Theory) affects attempts to eat healthily.
You’d think that having a chronic health problem would make it more important that I stick to some kind of healthy eating plan and you’d be right. But you’d also be wrong because for us Spoonies everything has to be balanced. Any spoons I spend on meal planning are spoons I won’t have later should I need to pay some bills. Any spoons I spend on preparing a nutritious meal are spoons I can’t spend on cleaning up afterwards.
Often the Spoonie life means half assing a bunch of things because if you spend the spoons to do any of them properly it’ll be the only thing you do that day. All those partially solved problems become a cascade of further problems. So instead of doing the laundry OR cleaning the kitchen OR working on my novel I end up putting some stuff in the tumble dryer, wiping down one kitchen surface and fixing exactly one scene. So the next day I have laundry that’s not put away, a hob and a sink that still need cleaned and one slightly less shitty scene that mainly succeeds in making the rest of the novel looking bad.
Not that any of this means I’m giving up on my diet. I’ve got a doctor to prove wrong.
*For people outside the UK the ‘Beast from the East’ was a polar vortex weather system that plunged the whole country into arctic temperatures for a week. It wasn’t just that the temperatures were very low it’s that the temperatures were that low pretty much everywhere so the road clearing services were stretched very thin. It also didn’t help that so much snow fell that our usual tactic of gritting the roads so that the snow melts faster and vehicles can maintain grip was rendered useless.
Every day the first thing that I do is to fight with my compression tights. And also my self image and my failing body. I say it’s the first thing but really the first thing I do is to wake up and curse the fact that I am awake and alive and that my life is still like this. Then I muster my limited mental resources for the act of will necessary to get out of bed. Then I fight.
It makes me so fucking angry. Getting up every day to fight a losing battle against the Lipoedema that will eventually turn me into a blob in a wheelchair. Being faced with the reality that I’m not strong enough to get my fucking tights on properly. Knowing that if I can’t master compression garments I won’t even get on the waiting list for the surgery that is the only lasting treatment.
Spending the next hour with weak arms and shaking hands because I’m not getting any better at this. Unable to go anywhere because I can’t get the tights to stay up while I’m walking. Fighting the urge to stab myself. To hack at the useless, lumpy flesh that’s destroying my joints.
And then I spend the rest of the day surrounded by the evidence of the chores that I can’t do because I’m too exhausted from my battle.
I’m trying to get better. I diet even though I hate it and I know it won’t fix the lipoedema. I try to exercise even though that hurts and so far actually seems to be making things worse. I’ve been trying the 100 squat challenge. It took me 3 days to get up to 100 squats but I haven’t managed it since because my right knee hurts too much. The knee pain woke me up this morning.
And the absolute worst is the feeling that it’s all worthless. What’s the point of all this fighting? All it does it makes me angry and tired. I’m giving up the ability to get stuff done now for the chance to be able to do more in the future. But that’s just not going to happen. I don’t get that lucky. This fight is doomed to failure and by fighting I’m making everything worse right now.
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When you’re a Spoonie ( person with a chronic life limiting illness but see the link for more details) people tend to assume that your problems all come directly from your illness without ever seeing how the secondary problems proliferate.
You’re in pain and the pain means you can’t sleep and the lack of sleep causes its own problems. The constant mental work of managing your very limited mental resources end up costing more of those resources. Your coping mechanisms have coping mechanisms.
At least once a year I burn or scald myself because my brain is on automatic pilot and I’m trying to do something that’s necessary for me to function.This time I stuck my whole right hand into my coffee filter cup while it was full of near boiling water. Then tipped the whole thing, grounds and all, all over the kitchen. Then I forgot I was wearing rings and had to strip them off after my fingers had started swelling.
I got lucky. Most of the swelling went down with a combination of cold running water as long as I could stand it and then sitting with an ice pack on the remaining swelling. But it’s annoying. And I never got my coffee. And I have a enough swelling on my right ring finger that it’s put a serious dent in my typing speed.
Now there’s no obvious line between Fibromyalgia and a burn. But I’m pretty sure that this burn happened because one of the consequences of Fibromyalgia is having to go about my day with a considerable portion of my brain either distracted by pain or working to manage my symptoms or my spoons.
Most of the Spoonies I know pick up multiple injuries a year as a result of their primary condition. Falls because their balance is wrecked, scrapes because they’re not fully aware of their surroundings, self inflicted cuts caused by trying to prep food while half asleep. And the worse bit usually isn’t the physical injury. It’s feeling like an idiot. Here I am, a full grown adult, and I stuck my hand in scalding hot water out of my own incompetance.
This week I put on a kilogram. I stuck to the diet all week long. I was well under my limit most days. I still gained a kilo. FUCK MY LIFE.
I suspect that it might be down to fluid. My right leg is really swollen at the moment. Like having difficulty getting into leggings that fit just fine 10kg ago swollen. It feels like a fucking balloon and my right knee is being a whiny bitch about it. I’m used to it complaining when I stand or sit but now it’s complaining while I’m in bed. Bitch, I am literally horizontal what more do you want?
It’s so frustrating to spend so much time and effort on this damn diet and get so little back. I don’t know what to do. I don’t have a plan except to keep going. The only other thing I could do would be to cut back on the carbohydrates even more but I really don’t want to do that because it’s just so miserable.
Hopefully it won’t be too long before I get referred to someone who can do something about the fluid.
After a very active weekend during which I had a couple of days where I ate less than half my allotted calories I have lost a whole 400g (just under a pound). And I’m in agony. And feeling like shit.
But at least I survived a 3 days of my Mum insisting that I should have a biscuit because they’re only small. She did make sure to tell me that she’s super proud of me for losing weight. It’s nice of her to say so but it doesn’t change the fact that the weight loss is meaningless.
Tomorrow (as I write this it’ll be yesterday by the time it posts) I have an appointment at the leg ulcer clinic. I don’t have a leg ulcer. I assume this is my Doctor trying to get me compression wraps. I predict that I will yet again be sent home with nothing but we shall see.
[Edit: I was not sent away with nothing. I got an actually useful referral. Yay!]
Last update. Diet Page
So the CBD oil that I’ve been talking about in previous posts here and here is definitely working.
My background levels of pain have greatly reduced and it’s now easier to deal with breakthrough pain. However my right knee has clearly decided to be a horrible bitch about things. It’s swollen and it’s grinding and it won’t reliably bend and it hurts whenever I do foolish things like stand up or sit down or roll over in bed.
And something else has decided to flare up. Something really painful. Something that I really need to see a doctor about but I was too late this morning to get an appointment and I have stuff to do tomorrow that can’t be moved and if I leave it till Friday to see the doctor then I will have reached my own personal defcon 10 of pain.
That’s not 10 out of 10 on the pain scale. That level of pain is just screaming until it stops. Defcon 10 is out of my mind with pain, distraction and frustration. It’s a result of having to just put up with a level and type and location of pain that no-one should have to put up with. Defcon 10 is dangerous because it makes me want to knife 40 people at random. Hopefully the CBD oil will help with this kind of pain.
If anyone is interested I will post links to the kind of vape pen, cartridges and oil I’m using.
One of the problems with chronic pain is that it’s a lot harder to treat than acute pain. With acute pain you can just knock it back with strong painkillers and then wean yourself off the painkillers. Acute pain also has a limited duration so there’s the option of putting up with it till it goes away.
Chronic pain isn’t going anywhere and over time the painkillers tend to become less effective. My pain is variable so I deal with it by only medicating it when it gets particularly bad and ignoring it the rest of the time. This is not ideal.
For the last week I’ve been experimenting with CBD. That’s cannabidiol which is a non-psychoactive component of marijuana. That means it doesn’t make you high. There’s some evidence that it can be used to treat anxiety, inflammation and pain. Sadly it’s the THC in cannabis that works really well against pain but that’s the stuff that makes you high and you can’t buy that legally in the UK.
I’ve been vaping CBD oil as it’s the fastest way to get it into the system. I’ve been using it to deal with those times when the pain suddenly gets bad. Oral painkillers can take up to 40 minutes to take effect so something quicker would be handy. I’ve also been using it when I’m feeling anxious as anxiety can make Fibromyalgia worse.
It seems to be working. It’s been helpful when joint pain hits while I’m out and about. It’s too early to be sure but I’ll keep you updated.
For now I’m using a disposable vape pen in blackcurrant menthol flavour. I was dubious about that as a flavour combination but it’s surprisingly nice. I will probably move to a refillable one now that I think it’s worth the money. If anyone else wants to try the same supplier I’m using I have a referral link. If you use it and you buy stuff I get a discount. Here’s the link – https://cbdlifeuk.com/?raf=ref1943134.
There have been some proper trials done on CBD that showed a positive effect. However only a couple have been large scale double blind trials. Most of the studies have been of quite poor quality. So I would suggest that if you are going to try it you take it slow, don’t spend loads of money on something that might not work for you.
A few days ago I wrote about my feelings of guilt at not working hard enough towards my writing goals. I wrote about how I’d been playing a lot of World of Tanks rather than writing. I said it was fun but it wasn’t taking me anywhere. Turns out I was wrong. It was taking me in the direction of pain.
One of the problems caused by Fibromyalgia is muscle spasms. Sometimes they come on without an obvious cause but they can be triggered by any repetitive activity or maintaining a the same position too long. Apparently when I play World of Tanks I grip the controller too tightly with my right hand (I use the right stick to aim and the right trigger to fire).
As a result my right arm is now, to use a highly technical medical term, fucked. I can’t feel my fingers, my hand is tingling, my forearm feels like it’s on fire and my bicep feels like I’ve been arm wrestling Thor. My typing speed is a quarter what it usually is and I need help to brush my hair and put a bra on.
It’s so bad I’ve had to break out the painkillers. Let me put that statement into perspective. I have a chronic pain condition. That means I’m always in pain. There’s no point medicating the pain all the time because I have to rely on synthetic opioid painkillers and the more you use them the less effective they are. My aim in using them isn’t to kill the pain but to reduce it to a level that isn’t a constant distraction. Thus I don’t bother with pain medication at all unless the pain is consistently worse than standing on a Lego brick.
To summarize: I’m too sore to write, too high to do chores and I can’t distract myself with video games because that would only make the problem worse. I would really like it if my life could stop sucking for a bit.
One of the most frustrating things about my combination of mental and physical disorders is that sometimes my brain just can’t. I know I’m not thinking clearly and I hate it. I don’t know exactly what causes it. I don’t know how to avoid it. I don’t know how to make it better when it happens.
It’s like someone packed my brain in cotton wool or bubble wrap. Some people with Fibromyalgia call it fibro fog but to me it feels denser than fog. I also don’t like assuming that it’s caused by the Fibromyalgia. I suspect that it’s more likely to be caused by depression or anxiety or information overload from pain or perhaps some horrible combination. Of course it could just be Executive Function Disorder in disguise.
I have a bad case of it at the moment. It’s affecting everything but it gets worse whenever I think about querying. I know that there are steps that people do. I assume that step one involves working out which agents to query but I can’t remember how I did that before and I can’t work out how to do it now. The more I try to drag my mind back to that task the harder it becomes to get it to do anything at all.
I’m hungry as I write this and soon it will be a meal time but I have no idea what to do about it. There’s a meeting that I should be going to tonight but there’s no chance of me going anywhere. There are definitely chores that need doing but I can’t remember what they are or how to do them.
I’m not entirely convinced that this post makes sense. I’m going to schedule this several days into the future in the hope that before it goes out I’ll be together enough to edit it. Of course I could forget all about it. So if you’re reading this and it’s full of typos and homophones and sentence fragments then I’m probably still too foggy to have checked it over.